New to this Forum: My husband has just... - Multiple System A...

Multiple System Atrophy Trust

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Cat-gal profile image
14 Replies

My husband has just been diagnosed with MSA after over a year of uncertainty whether it was Parkinson's or not because he went down so quickly. By chance, today I found this site so may need some getting used to finding my way around it. Many thanks as it is such a stunner for us.

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Cat-gal profile image
Cat-gal
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14 Replies
thedjsupreme profile image
thedjsupreme

Hi and welcome to the group. I'm a 52 year old msa sufferer. Still learning to manage the condition

Cat-gal profile image
Cat-gal in reply to thedjsupreme

Are we allowed to swear on here because it's a bit of a flooker! He now has a permanent catheter and now needs some antibiotics today as he has an infection again. I'm a retired Scientist in Histopathology so am cognizant with some medical tech info which, on reading, strangely helps me as it did when I had invasive breast cancer many years ago. Phil is 67 and I'm 75 so are hoping to avoid any sudden slow falls which sandwich me between him and the door frame. If you don't laugh you'd cry! 😆

thedjsupreme profile image
thedjsupreme in reply to Cat-gal

True. You need to change your sense of reality

thedjsupreme profile image
thedjsupreme

Hi. Welcome. I'm a 52 year old msa sufferer still getting used to this condition

Monkeyfeet1 profile image
Monkeyfeet1

Welcome to this wonderful forum. Sorry you have to be here. I’m 53 and have MSA-C. X

Cat-gal profile image
Cat-gal in reply to Monkeyfeet1

My husband is 67 and was initially diagnosed with Parkinson's but, as he came down so quickly, his Geriatrist has just informed him that he has MSA. Your post says MSA-C which I haven't heard of. Would you mind letting me know what it is about. Many thanks.

Monkeyfeet1 profile image
Monkeyfeet1 in reply to Cat-gal

MSA is usually determined to be more C (Cerebellar) or P(Parkinson ) but that’s my understanding. Keep asking questions! All the best to you and your husband x

thedjsupreme profile image
thedjsupreme in reply to Monkeyfeet1

No age. The only benefit is extra fitness

Monkeyfeet1 profile image
Monkeyfeet1 in reply to thedjsupreme

I’m an ex-runner and have climbed the Inca Trail but this B****** doesn’t care xx

thedjsupreme profile image
thedjsupreme in reply to Monkeyfeet1

I ran 42 marathons I had msa undiagnosed with the early stages and just got to the 10km in Amsterdam

Monkeyfeet1 profile image
Monkeyfeet1 in reply to thedjsupreme

I’ve only done 10 marathons. It makes it so difficult 😥

thedjsupreme profile image
thedjsupreme in reply to Monkeyfeet1

Hang on in there. My theory is to try to keep the training up. Stay on your feet as long as possible. This is like training for a marathon

Monkeyfeet1 profile image
Monkeyfeet1 in reply to thedjsupreme

It really is! I’m now in my 5th year. It’s hard. Xx

thedjsupreme profile image
thedjsupreme

I'm hoping the training will buy time. I'm 15 months in now

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